A PERSONAL INVITE

local friends, a lyme awareness evening is coming to tsawwassen, BC and you are invited to attend! it is an evening that is designed to raise lyme awareness and educate GPs, vets, and the community at large.

Thursday, May 30 at 6:30pm

The "Little" House

5061 12th Avenue

Tsawwassen, BC

good friends of ours, sharon, mike and karen, have worked very hard to make this event a possibility. this invite is accompanied by sharon's personal story. she has given me permission to share her story.

but first, a bit of background.

sharon and mike have become good friends. we came to know them when they quite literally arrived on our doorstep one afternoon feeling as though they were out of hope and out of options. they suspected that sharon's debilitating symptoms were caused by lyme. after all, she had been bit by a tick in nelson, BC and had had a peculiar rash. yet, doctors dismissed this finding when her Lyme test returned a negative result.

i remember our first meeting as clearly as if it were yesterday. sharon's pain and suffering were palpable - and i was all too familiar with the desperation, the confusion, the sense of abandonment and the fear that her and her husband felt in the face of her desperately declining health and not knowing where to turn for answers or help
and 
i didn't know how to help. at that time the only viable treatment options were south of the border. it was a difficult day. it stayed with me for a long time. 

to see your life or the life of your loved one slipping away and be abandoned by your doctor and medical system is nearly inconceivable. yet, this is the reality of a lyme patient. 
this. must. stop. 
yet, as long as lyme is regarded as a four letter word in our health system and the general public is not adequately made aware of the risk, sharon's story will not be the last.

preventing this from becoming someone else's reality is the fire that fuels those of us with lyme to so doggedly and determinedly spread awareness and educate the public.
please come out and show your support and learn how to protect yourself and your loved ones. 
ticks know no boundaries. 
everyone is at risk.

SHARON'S STORY

Dear friends and family,

As many of you know, I have been unable to work since February 2011 when a mysterious ailment had me in emergency room with excruciating pain, leading to a substantial decline in cognitive ability thereafter.    

Hundreds of tests were run for every obscure disease under the sun.  I was hospitalized twice: once for four days, and then again for a two week period where doctors ran intensive tests.  Eventually at one of the many specialist visits, Lyme disease was suspected.  The standard initial Canadian Lyme test was done and came back negative (we have since learned that this particular test is highly inaccurate).  After seven months of going from specialist to specialist, a friend who had gone through a similar experience consulted with me.  Mike and I ordered the tests he recommended from a private certified lab in the USA.  We reviewed them with the Doctor from the lab and were informed that I was 98 percent positive for Lyme disease.      

In the process of trying to get help, we lost our family’s doctor of 20 years.  Doctors are reluctant to treat and most lack the knowledge of how to do so.  At a time when I was in immense pain, I felt abandoned by the Canadian health care system.  Mike’s employer gave him permission to work from home three days a week in order to care for me, with family and friends filling in on the days he couldn’t.  It was a very difficult period.  We will be forever grateful for the people that organized and helped us with meals, prayers & errands during this time.      

We were advised by others that I would need to go the United States for treatment by a Lyme literate medical doctor, but I was too ill to travel.  In September of 2011, Mike and I found a Naturopath who could prescribe antibiotics (plus support supplements) and since then I have been receiving treatment.  Getting better is not an easy process.  If my medication is reduced for any length of time, I rapidly regress.  Some people never recover and others spend decades trying various expensive treatment protocols.  Our own costs have been substantial.  However, there are a few bright moments such as this past weekend.  Accompanied by Mike and others we traveled to the Victoria Legislature Buildings for a Lyme awareness event.  I met others with Lyme disease and spoke with Elizabeth May (MP), Lana Popham (MLA), David Cubberley (retired MLA) among others.  The drawback to a day such as this is many days afterwards in bed.  

I am not alone in this situation.  There are hundreds of people with Lyme disease in BC.  Many never saw a tick or knew they were bitten.  It's not just a disease that attacks campers and hikers as people have been infected in their backyards gardening, on school field trips or just walking their dog.  We know of people in every area of the lower mainland with Lyme disease.

A friend of mine, Karen, whom I met through The Vancouver Lyme Support Group, was the interior designer of “The Little House” in Tsawwassen.  They have graciously offered the use of the building and their assistance to hold a “Lyme Awareness Evening”.  

On Thursday, May 30th at 6:30 pm we are inviting Dr. Murakami (a retired BC Doctor and Lyme expert) to speak.  The evening is designed to explain preventative methods, early signs and symptoms, late symptoms, how to properly remove a tick so that it doesn't infect one further, treatment protocols, et cetera.  Gwen Barlee, the policy director for the Vancouver Wilderness Committee, will speak to the political issues surrounding the disease.  Mike has been asked to speak to how this specific disease affects a family.  There will also be a Q and A.  A poster with more details is attached.  

It would mean a lot to me if you would come out to show your support.  Thanks for your time.  

Sharon

ON A WING & A PRAYER

this week sparky's first 2 doses of IVIG arrived. as is all things pertaining to lyme (& lyme treatment), this was not a straightforward process. in fact, it rarely is. in order to pick up many of our meds, we have to make a canada/usa border crossing. we call these 'drug runs' and we make them frequently.  

even though prescription meds are exempt
and 
everything we are doing is above board
and
we do this all the time,
we still find these drug runs stressful.

in general, our drug runs usually total between $500 to $1200. declaring that amount, after having only been in the country for 20 minutes, has raised more than a few eyebrows. we get it - our whole situation is a bit bizarre sounding and it is exhausting to try an explain to a grumpy border guard, so we are very  grateful when we are waved through at the border without having to provide a lengthy explanation. 

more often than not, this is the case but you just never know.
somehow, this time just felt a ton more stressful than usual...
this time our sojourn into the usa had been under 20 minutes
and
we'd be declaring close to $3,000.

on top of that, the whole shipping and delivery process had been a bit of a nail biter as the meds had been shipped from florida. they had to be kept cold so were shipped overnight express on ice. then we had to track the package like fiends to ensure that we made a timely pickup at the PO box. 

after all, there is so much at stake
and
so much hope riding on these 8 little vials of human gammaglobulin.

liquid gold, it is.
at that price, it may as well be.

pick up went relatively snag free - i say relatively because the package was addressed to sparky - and his name is not on the "authorized to pick up" account. in fact, he wasn't registered in the system at all so initially the mail gal couldn't even find it! all i can say, is that we are very fortunate that we are frequent customers.

we were in and out of there with our precious cargo in under 10 minutes. as the border crossing and guard booths came into view my heart rate increased, my insides wobbled and my hands started to shake and i uttered a breathless whisper of a prayer, "please, Lord, just have them wave us through." 

i breathed deeply and reminded myself that others were praying that too as i had posted this as a prayer request on FB earlier in the day...

"please pray custom officials wave us thru,

 despite the eyebrow raising dollar amount we will be declaring." 

just as we pulled up to the booth,
the officer inside turned her back to us and spoke into her radio.
my heart sank.
the one and only time that an officer pulled that move was because they were calling in a search team because, as we were told, the system had randomly selected our vehicle for a search.

yet, as the guard turned around to face us, her eyes were not on us.
i followed the direction of her glance
and
there, just past my passenger side and by an empty guard booth, stood a man. he was trying to open the door to the booth.
i heard the guard say, "excuse me."
the man did not look up.
i glanced back at her as she said it again, "excuse me. what are you doing?"
with her eyes still fixed on the man, she addressed us,
"anything to declare?"

"yes." came graham's reply, "$2,956.10 in prescription meds."
i held my breath.

she gave us a brief, blank look as she craned her neck, raised herself up on tippy toe and as she began to once again address the mystery man, she waved us through.

HALLELUJAH!

i caught a glimpse of the man as we drove away. he was an ordinary enough looking older gentleman. dressed in unassuming attire with a tool belt slung across his shoulder...but i can't help but wonder about the origins of this mystery man. after all, his odd presence heralded us thru the border on a wing and a prayer.

we face another issue that we are trusting we will be lifted up on a wing and a prayer too. we do need help. we are incredibly grateful that the help of family and donations from some friends, have made it possible for us to secure this first dose of IVIG. it means that sparky will be able to start this treatment within the time frame that DR H recommended... i'd also like to send a shout out to Infuserve America, a pharmacy that works hard to help uninsured Lyme patients access IV meds at as low a cost as possible. 

as you can see they helped us "save" a substantial amount on Sparky's IVIG.

please keep in mind that this is the first of what is expected to be a minimum of 6 doses of this medication. we cannot finance this without help.  the photo fundraiser that our friends kristie and alexis are holding on our behalf is next saturday and sunday - a mere week away. 

as it stands today, one person is registered to take part. 
surely there will be more? 
we are hoping that this number will increase. 

we are trusting for angels to show up for this too!

please don't delay!
sign up today!
you can book your session by contacting Kristie at 604-910-3866 or email info@dejongimages.com 
or
through our facebook event page at
Mother's Day Lyme Fundraiser

A NEW LOOK

if you are a regular blog reader you may have noticed there are some changes happening on my blog. stay tuned & bear with me over the next several weeks as i work towards giving my blog a bit of a fresh new look. 

my daughter accuses me of being too "matchy-matchy" and it is true. i'm guilty of liking to have things orderly and coordinated - from house to wardrobe to closet to merchandised pantry to even wearing outfits that co-ordinate with my IV line

but that's me
and
that part of me has not been very present over the past 7 years.

when you are in survival mode, not a lot of energy, effort or thought goes into upkeep - either by way of your home, your person, and your relationships. life becomes merely about just existing - at times, even doing that minute by minute is a tall order. 



but i believe the tide is changing.

i believe the darkest of those days are behind behind me. there is still work to do. after all, recovery and healing is a process. but i feel as though i am stepping out of the shadows of the valley of death. aside from the barfing & weird veggie and fruit allergies, my health has been far more stable & manageable for roughly the past 18 months.  back in march 2013, i had to go back on IV treatment. after having been off IV since august 2011, this felt like a huge backward step. initially, i was incredibly disheartened by this however, the addition of IV, has made a significant difference. i have now been back on IV for 3 months. it is not a rigorous treatment schedule as i am only on IV one week per month. these short pulses of medication have made a huge difference! at long last we seem to have found the right combo of meds to keep my symptoms much more manageable.

as my physical symptoms stabilized over the past 18 months, i began to focus my energy on healing the neglected parts of me. as my physical body becomes healthier and not the primary focus, i have become increasingly aware of how battered my spirit is. my inner me has taken quite a beating - so for the past year or so, i have been on an odyssey to reclaim the parts of me that have lay dormant or have been wounded in battle.

much of this process has occurred in my therapists office and with the help of a PTSD therapy called OEI. over the last little while, there have been many hard fought battles for personal freedom and recovery from the emotional scars that my fight with Lyme has given me. 

"Healing takes courage and we all have courage, 

even if we have to dig a little to find it."

i'll get around to sharing that one day...for today, i'd rather keep this light! after all, this post started out about the overhaul i'm giving my blog. it's time for a fresh, new look. for some reason, it just looks so drab and dark to me now.

speaking of drab and dark...as my internal metamorphosis has unfolded, i began to feel the need to have those internal changes reflected externally. so last august, i embarked on an epic adventure to change my hair color from black to blonde.

i am not kidding when i say epic.

the initial metamorphosis took 8 hours

yes. 
8 HOURS
EIGHT HOURS
and
it has taken an additional 6 months and several rounds of bleach to complete the new look.

nothing like making up for 6 years of not being able to go to the hair salon in one sitting. how blessed i was to have had a hairdresser DONATE her time and services! i know, right! she deserves an award!

the color choice? blonde. 
yet, did it really matter whether i became blonde, brunette, red, purple, green,  or orange? after all, this was not a vanity thing. this was about reclaiming me. it was about shedding the dark and stepping into the light. this was about me standing up to a disease that has chewed me up, spit me out, and cast me into the pit of hell over and over again. 




of course, stripping 6+ years of home dyed black hair to a sunny shade of blonde didn't happen in a single process. change takes time. and, ok, let's keep it real here...i wasn't overly ecstatic with the day-glo orange hue that was the initial result. furthermore, i was mortified when i learned that we would be filmed for the Nature of Things Lyme documentary whilst i was in the midst of being 3 simultaneous shades of orange. 

i guess vanity isn't completely dead.




but, TV appearance aside, the color didn't matter so much as the act of doing it did. 
it was the ability to do it that was the big stinking deal.

i have had my haircut a total of 4 times in the past 6 years. initially, lack of follicle trimming was due to my bedridden state. i became more well and able as i moved through the years of treatment, but the unpredictability of symptom flares made it way too dicey to book appointments. i never knew if i would be well enough to remain upright in a chair for 15 minutes. and admittedly, i saw no reason for the upkeep - after all, i rarely left the house and when i did, it was often in a hat. and well, in all honesty, i lived under a hat for the first several months while my black to orange to blonde metamorphosis took place. that wasn't a vanity thing - that was a public safety thing. 

this new look is a big stinking deal because of what it represents.
i am shedding the dark and stepping into the light.
it takes work.
it's a process. 
it's not easy. 
it's not always pretty. 
at times, it has been downright terrifying
but i. am. healing.

VICTORIA, BC LYME RALLY

well, this weekend was the BIG event!

 as part of the World Wide Lyme Protest, we took part in a Lyme Awareness Rally in front of the Legislative Buildings in Victoria, BC.

On our way!

thanks to a generous anonymous donation, our family was able to attend. even harrison. he was raring to go. and as you will see from pictures, he insured that he was as visible as possible. i think the funniest is him peering over the shoulder of david cubberley, the director of the board of the canadian lyme disease foundation (canlyme), in the group shot.

ol' harri soaked in the attention he received from his adoring fans. he was a busy guy - working the crowd, kissing babies, taking advantage of as many photo ops as possible, and well, just meeting the people where they are at...
if i didn't know better i'd think he was running for office.

it was a long day. we left our home at 8:30am and did not arrive home until 9pm. both sparky and i have paid the price since but it was well worth it.

On our way home
A little worse for wear and a little sad the day is over

both graham and taylor were slated to give speeches but at the last minute, we made a switch-a-roo. we decided the girls would speak and the boys would be on film and picture duty. i had been asked to give a speech a few weeks back but initially had declined. i had really wanted to take a back seat at this rally and not deal with the stress of writing and delivering a public speech. the last 2 weeks have been incredibly busy and a speech was not even on my radar. yet, as fate would have it, on the night before the rally, i found myself frantically trying to pull something together. with graham's help, i was able to come up with a short speech.

last minute editing on the drive to the rally

fortunately, avery, who is an avid journal writer, had penned 2 entries that were "speech worthy" in recent weeks. however, she was unsure if she had the nerve to deliver them in front of a public audience. in fact, up until the morning of, she had decided she didn't want to. then as we were leaving for the ferry, she said she wanted to bring them with her, just in case...

the ferry ride went by in the blink of an eye as we had about 20 -25 travel companions - lyme friends from our local support group were able to make the trek over. it was a great time just to visit and be with people who truly 'get it.'

it wasn't until we piled into our van to drive off the ferry that avery made the final decision to give her speech. now, keep in mind, she had written two. both were excellent albeit there were a few sentences in each that we figured were a bit too pointed to make the final cut (something along the lines of how she'd like to spank a few doctors) so on the drive from the ferry terminal in Victoria to the legislative buildings, we worked furiously in a mad fast editing session and the final speech was produced just in the nick of time.

she wrote every word of it by herself and delivered the speech of her own accord. so proud of her!

it really was an incredible day. there is something so healing, so inspiring, so empowering about being with those who walk the same journey as you. and being able to come together as a collective group and fight for change. it was wonderful to finally meet in person the dear friends with whom i've forged on line friendships with. there were so many hugs and tears exchanged. i am honored to know and be in community with these very courageous and strong warriors. 

my recollection of the actual program and speeches of the day is actually a bit of a blur. i am so grateful that graham was able to so expertly capture it all and am looking forward to being able to sit down in the comfort of my home, with a good cup of joe and finally soak it all in.

Some of the Rally Speakers
(thx to SB for this collage)

as soon as we are able to edit the footage into uploadable formats for your viewing, we'll be posting them here on the blog as well as facebook and youtube.

so stay tuned!

we hope that you too, will put your feet up, grab a cup of coffee and watch!

WORLD WIDE LYME PROTEST

MAY IS LYME DISEASE AWARENESS MONTH!

This year, for the first time ever, Lyme awareness events and rallies will be held worldwide during the month of May. Many events have been co-ordinated to take place on May 10 & 11, 2013.

To find information on events & rallies that are close to you, please visit the website, World Wide Lyme Disease Protest (WWLP) or the WWLP facebook page 

It has been exciting to see this event take shape and spread like wildfire across the world! There are now 30 countries participating!

Canada is among the countries participating with events taking place in many provinces. Please visit the following Marlene's blog, Meerkat's Heap to find information on the various Lyme events taking place across Canada - World Wide Lyme Canada 

BC TICKS CAN MAKE YOU SICK!

A large rally will be held in Victoria, BC on May 11, 2013. Our family will be attending. Both Graham and Taylor will be speaking. You are invited! We'd love to have you there!

Please join us in honouring the first "World Lyme Disease Day", held in 30 countries world-wide to bring awareness about Lyme Disease. We'll be gathering at the steps of the Legislature building, in downtown Victoria, BC. 
Speakers include: 

~Elizabeth May, Green party leader and author of private members bill for a National Lyme Disease Strategy
~Murray Rankin, NDP MP 
~David Cubberley, Canadian Lyme Disease Foundation Director and advocate
~Lana Popham, local MLA and advocate
~Dr Jasmine Wong ND 
~Nicole Bottles and other patients will speak about their experiences

The Victoria Lyme Disease Support and Awareness group is hosting this event, and will be there handing out informational pamphlets and answering any questions you may have. 

This event is crucial to the public's awareness of Lyme Disease, and to our own quest for justice and help in our home towns. 

A small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history. 

                                      ~ M. Gandhi

MOTHER'S DAY LYME FUNDRAISER

MAY 25 & 26, 2013

We are excited to invite you to participate in an upcoming photography event being held on our behalf!

Sparky's former preschool teacher, Alexis and my friend, Kristie from deJong Images have partnered together on our behalf. The following is a message from Kristie:

"I am honored to participate in this amazing fundraiser!! On May 25/26, 2013, I (de Jong Images) will be holding two days of photography sessions!!! Each session is $75.00 for a photo shoot. Session fees will be donated to Shannon & Graham Goertzen to help offset costs for their son's Lyme disease treatments. (Clients will have option to purchase photos.)

Lyme is not currently recognized in Canada and so they are forced to pursue adequate care for their son who battles chronic Lyme in the US. (As if that wasn't enough, Shannon herself battles Lyme Disease.) You can read a summary of their son's fight with lyme at Sparky's fight.

Sessions are 30 minutes long.
The event is being held at Bear Creek Park, Surrey, BC
May 25 & 26, 2013
9AM to 6PM (both days)

You can book your sessions either through our facebook event page at
Mother's Day Lyme Fundraiser
or
you can contact me, Kristie, at  604-910-3866 or email info@dejongimages.com
Client times will be copied to a Master List to avoid double bookings. 

Let's shock this family's mind with generosity so that they can save their son!

PHOTO TIPS:
The tips are no whites, no blacks, solid colors, no stripes or patterns and no logos that date the shots. Families don't have to be in the same colors but complimentary works best.